Thursday, October 23, 2008

4 Years down...6 to go :-(

I just came back from seeing the transplant doctor today. Dr. Schiff. He's a really nice person. I went to see him today, just so he could basically look over my bloodwork and stuff.

Things that I had put out of my mind were brought back to the forefront. I've had two bone marrow biopsies, one last year and another the year before (I believe). The main reason for having this bone marrow biopsy in the first place was to investigate my ever dropping/never rising hemoglobin (which, has since resolved itself since being on home dialysis). However an unexpected surprise was found. There was something in my blood that might indicate blood cancer, aka leukemia. Upon further investigation, it was found that I don't actually have leukemia, but whatever cells or whatever it was that they saw in my blood might or might not indicate leukemia in the future. It worries me.

Dr. Schiff still wants to keep me on the transplant list. He told me once again that I'd be put on the transplant list as of when I first started dialysis, which was in 2004, either September or October, I cannot remember. So, usually, that would mean at least another 4 years of waiting for me. But of course, there has to be a complication where I am concerned. Because of several different factors including my blood type, the time it'll take for me to get a kidney increases from a minimum of 4 years to a minimum of 6 years. Basically, it takes about 10 years, and since it has already been 4 years, there are 6 more to go.

Dr. Schiff has mentioned that because of this gene or whatever it is in my blood, when it does come time for transplant (which, he said, he wants to get me one immediately) they'd want to give me different or more moderately dosed medications. I'd also need to be watched and monitored regularly to make sure I don't suddenly develop leukemia. I really hope that doesn't become an issue. Geez, I have ENOUGH to deal with. I certainly don't need cancer to ice my cake. I'll take my already decadent cake without icing, please!

For other people who get transplants, usually after taking the immunosuppressants for a certain amount of time, they are able to completely come off of these drugs. I'm not sure that'll be the case for me. I've been taking immunosuppressants consistantly for 12 years because of my lupus. Just because I get a new kidney, I don't think that's going to "cure" my lupus, therefore making it ok to just stop my immunosuppressants. The doctor I spoke to before Dr. Schiff had mentioned that and said that there would need to be discussions between Dr. Schiff and my rheumy Dr. Fortin in regards to that. I don't see him allowing them to completely stop my immunosuppressants, but we'll see.

I'm not the expert. However, at times, instead of following my own instincts I allowed others to make decisions for me. The biggest mistake in that regard that I've ever made was allowing some doctor I've never met before to stop many of my medications all at once when I was leaving the hospital (ramipril, fureosemide, etc). He stated that these medications were "bad for my kidneys". That was at the end of August in 2004. Needless to say, as I mentioned earlier, I ended up on dialysis in September or October-ish. I'm positive that it was in direct relation to all those medications being stopped at once. While I had been informed that I would eventually need dialysis, I strongly believe that if I hadn't had that doctor that day, my complete renal failure would not have occured for at least another couple of years. Sad, but true.


I'm doing much better on home dialysis, but the idea of having to do it for at least another 6 years is a bit scary. I like having this control over my life, but I'm also a bit helpless when it comes to other things as I have mentioned in previous posts, like just taking off and going on vacation and things. People take off to on vacation all the time. They do it because it's just something that they want to do...they just want to get away. When will it be my turn to get away?

1 thought(s):

Anonymous said...

HI! I found your blog about a month or so ago and must say I am very impressed. You have been through so much, yet have such a postive outlook and strength that so many people could never understand. I too have Lupus Nephritis. I am 36 but was dignosed in 1993. My kidneys failed in 2005 and I spent 1.5 yrs on in center dialysis until I received a kidney in May 07. My total waiting time was about 3 yrs. Is the long waiting time typical for Canada? 4-6 yrs minimum is crazy! They do not have domor organ awareness via the Drivers facility or online? here in the states they do have commercials and at the Drivers License facilities you can register to be an organ donor should you die. I live in Illinois and in 2006 they just set up a first consent law which means you make the decision to be a donor if you die and your family has no say in it. I am also a part of a High School education program that educates the the students on the need.
The interesting thing is I have NEVER seen anything on Lupus here. Either on Tv, billboards etc, though I am working on that too.

 
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